I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

New to this site ad trying to figure out how it works. I am trying to post as a new member so I am hoping this goes thru. I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly). My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular. Some …

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

I went to an OB/GYN, checked for a UTI (negative), was told I had a mild prolapsed bladder, and a yeast infection. I treated myself for the yeast, but continued to have pain. I went back and asked for a complete Pap smear, and labs to check for all STD's (negative and Pap was fine). I had also had the Mirena for 4 years and requested it be removed in case that had something to do with it. The doc removed it, and after 2 of the worst periods ever, I had a new one put back in. It made no difference in the pain. That particular OB doc said he could do nothing more for me.

I scoured the Internet for practitioners who specialized in vulvodynia and chose a women's' health clinic that treated a variety of disorders. The doctor I established with there suggested pudendal neuralgia. Thus began a series of MRI's and consultations with an orthopedic specialist and a neurologist. I had some mild degeneration in my lumbar spine, all the others were normal. My blood was tested for many neurological conditions and a hormone panel was done as well. I was not in menopause and other than my pain, was fit as a fiddle. I was also tested for interstitial cystitis (neg) and a transvaginal ultrasound was normal.

My vulvodynia specialist had performed several Q tip tests and suspected possible vesibulitis along with vulvar pain and referred pain in my back. His suggested treatment was injections in my vulva to reduce pain.

The day I was to start injections, however, my husband accompanied me and asked my doctor if my constant arousal was due to this. I hadn't told the doctor about that, it was embarrassing. Then he said my problems were beyond his expertise as he determined I had persistent genital arousal disorder (PGAD) as well. He told me about Dr. Irwin Goldstein in San Diego, that he was a top expert in America and wanted me to be evaluated by him.

We live in Missouri, but with my parents' financial assistance, my husband and I flew there last week for a consultation. We met with a sex therapist first, then a pelvic floor therapist, then Dr. Goldstein, who co-authored the book 'When Sex Hurts'. After a very painful exam and vulvoscopy, I am now diagnosed with 'congenital neuroproliferative vestibulodynia'.

I am preparing to embark on hormonal treatment and correction and, after 6 months if I have little relief, I will have surgery to remove my vestibule. I have decided I can live with the PGAD, as I have since the age of 5.

My preference is surgery, but Dr. Goldstein begins the more conservative approach instead. At times, before being diagnosed, I suffered bouts of depression and even suicidal ideation. Dr. Goldstein is very skilled and compassionate, with a long list of credentials.

I have agreed to speak at a conference in the spring made up of medical professionals, to share my condition(s) to educate. It helps that I'm an RN myself. I left no stone uncovered. My advice is to seek out specialists, if your finances allow it. And to never give up.

I'm glad I found this forum and I'm sure I will have many questions as I start my treatments.

Good luck to you and thanks for sharing your story. I agree with your advice to seek out specialists whenever finances allow for it and to never give up. I'm sure that there are effective treatments out there for many sufferers, but finding the right treatment can be a real marathon.

It is so good to hear a positive story. Thank you for taking the time to write it here. May I ask what hormonal treatment you are having? I have suspected pudendal nerve issues but I also can't help feeling there is a hormone issue too.... My GP has only done a blood test to check my oestrogen which was apparently fine. Anyway best of luck with your recovery! x

Weekly testosterone injections, a compounded estrogen/testosterone cream directly to my vagina, potentially both oral estrogen/progesterone combination in a low dose so as not to increase risk of cancer.

But for now, testosterone injections and hormone levels every 10 days for a month, to determine whether or not I need the other oral hormones. But the injections and cream always.

Have they determined you have a hormone imbalance then? If so, how was it diagnosed? Excuse my ignorance, I'm often walking in the dark with this condition! Wishing you lots of luck moving forward with your treatment.

A random hormone panel showed everything in normal range. Except virtually zero testosterone. So I start testosterone injections today, then he's drawing panels on me every 10 days for a month to see where I am in my cycle. I typically don't have periods because I have the Mirena, and I'm not menopausal. After reviewing my labs, he will determine the dosage of hormones I need.

Thank you. My GP only checked my oestrogen I think. He said I'm too young (I'm mid thirties) to have a hormone problem which I sort of felt fobbed off by. My gut feeling is there's more than one factor to my pain, but it does flare at certain points in my cycle. So I feel there may be a hormone issue as well as nerve issues (which I'm seeing an osteopath for). When I told my GP that my pain flares when I'm ovulating he looked perplexed which only served to make me feel even more like a medical anomaly!

WaahwaahUK wrote:When I told my GP that my pain flares when I'm ovulating he looked perplexed which only served to make me feel even more like a medical anomaly!

On the subjected of perplexed GPs: my consultant told me that about 8% of women have vulvodynia. Now, I'm not sure if he meant at some point in their lifetime or that at any one time, 8% of the female population is experiencing vulval pain. Either way, that's a lot of women. GPs really shouldn't be so unknowledgeable about the condition, should they? I'm not blaming them - I know they have to know a fair bit about thousands of conditions so can't be experts in everything (that's what consultants are for) - but one would think they should encounter women with vulvodynia fairly often, and, if so, should know more than what the average GP seems to!

Yep I agree PainBlogger! Two gynaecologists so far didn't seem to have a clue either which is so disheartening. I don't understand this all too common attitude of - well you don't fit the box, I don't know what to do with you, you're not dying as far as I can tell, so off you go!! Meanwhile many of us are left in pain and researching our own way around it!